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ASH 2020: A Myeloma Coach's Perspective on Accelerating the Standard of Care
Posted: Dec 08, 2020
ASH 2020: A Myeloma Coach's Perspective on Accelerating the Standard of Care image

The scientific excitement emerging from ASH 2020 is significant and for good reason! Thanks go out to the scientists, clinical trial participants and clinicians for paving the way to enhanced treatments and potential cures for myeloma. One comes to appreciate the time and energy required to go from pre-clinical stages to product approval and market access.  It can take years if not decades.

As myeloma patients, we eagerly anticipate the availability of new options that are best suited for our specific case. We look out for emerging evidence on demonstrated efficacy and safety of innovative, breakthrough agents as well as evidence on new uses for approved, existing treatments. We wait (im)patiently for these scientific advancements to become “standard of care.” Understandably, but unfortunately, however the emergence and widespread application of the standard of care, can take significant time. Since time is so precious, I propose there are actions that we as patients can take to accelerate the standard of care and our awareness and access to our “best” personalized treatment options.

Personally, I am pleased and grateful to celebrate 2+ years of remission post induction, consolidation, transplant and maintenance, yet I am also a realist and understand that for most myeloma patients like me, relapse is inevitable and that the duration of remission and outcomes worsen with each relapse and line of therapy.

With my future in mind, I wonder, will a CAR-T, bispecific antibody or other promising, targeted agent be available and appropriate for me when I relapse and need my 2nd line option? Typically the new agents are first studied in patients with the most advanced disease, such as 3rd line or greater. But, when initial trials show promise, additional trials typically begin in earlier lines of therapy.

To ensure that I have timely access to the best options of today and tomorrow, my myeloma specialist and I have an ongoing discussion about strategies to sustain my deep, durable remission considering  the latest evidence on maintenance therapy and careful monitoring including periodic assessment of minimal residual disease (MRD). This active engagement will hopefully buy me some time for the science to emerge and result in new options in earlier lines of therapy.

As we eagerly await future options, it is important that patients take an active role now, to ensure that the treatment plan is optimally designed to take advantage of existing options, whether these options are available as FDA approved agents or via clinical trials.   

Moving From Research to Standard of Care

One of the currently available, approved options for indicated myeloma patients is the anti-CD38 inhibitor monoclonal antibody, daratumumab. At ASH on December 7th, Dr. Peter Voorhees presented encouraging 2-year follow-up data on the safety and efficacy demonstrated in the GRIFFIN study.

He concluded that “these emerging data suggest that the deep responses seen in the randomized phase of GRIFFIN are durable and will continue to improve over time, and that D-RVd may be a potential new standard of care for transplant-eligible NDDM.”


The Value of Real World Data

This study is an example of the great news revealed at ASH, but how is a patient to know if the cutting-edge science is being put into practice and becoming standard of care in the community? Real world data on treatment patterns can shed light on this question and can be the catalyst for a conversation with your care team.

In a poster presented at ASH by A. Gershon titled, “Real World Data (RWD) Treatment Patterns and Sequencing of Patients with Multiple Myeloma (MM)”, the electronic health records of 5,890 patients in the Flatiron Health Database were evaluated to better understand treatment patterns that evolved between 2015 and 2019. The authors concluded that across lines of treatment from first line to fourth line and greater,” ImiD, PI and IMiD+PI are the most common treatment categories, but that anti-CD38 treatments are increasingly used in recent years in later lines.”  The author noted,

“Between 2015 and 2019, the use of anti-CD38 treatments in second line increased from 1% to 20% overall, standard risk, SCT eligible and community patients, 2% to 15% in SCT ineligible, and 10% to 20% of academic patients. Between 2015 and 2019, the use of anti-CD38 treatments in third line increased from 10% to >30% in all, standard risk and SCT eligible patients, 10% to 20% in academic patients, and 2% to 20% in community and SCT ineligible patients. Over 40% of fourth line plus patients were treated with anti-CD38 treatments by 2019 regardless of subgroup.”

This poster illustrates that the standard of care regarding the use of anti-CD38 treatments is evolving but accelerating the acceptance and utilization of this treatment may be warranted.

Editorial note: We created HealthTree to better understand real world multiple myeloma patient experiences. 

Three Ways to Accelerate New 'Standards of Care'

So, what to do with this information? First, understand it takes time for new treatment options to emerge as standard of care. Second, understand the importance of having a myeloma specialist on your team. If you do not currently have a myeloma specialist, you can find one here. Third, take heart in that you may accelerate the inclusion of a promising new treatment in your care plan if you initiate the conversation with your care team.

Questions you may want to ask include:

  • What treatment options might be best for me, in what sequence and why? Are the proposed products currently approved or available through a clinical trial?
  • If currently in remission you may ask, what maintenance strategy might allow me to maintain the longest, deepest possible remission? If relapse occurs, what are my next possible steps?
  • What are the potential benefits and risk of these proposed treatment approaches?

Your personalized treatment plan will be adjusted over time based on a variety of considerations including:

  • Age, performance status, kidney function, bone disease, other illnesses
  • Your risk level including ISS staging and genetics
  • Effectiveness and tolerability of your previous treatments
  • Personal goals, access, and lifestyle considerations

As myeloma patients, we have the “need for speed”. Through an engaged conversation with your care team and myeloma specialist, you may accelerate the inclusion of breakthrough science into your treatment plan. It could save and  improve your life.

When I was diagnosed with multiple myeloma in 2017, I remember being overwhelmed on many levels. I was relieved and grateful however, to discover that the myeloma community of patients, caregivers, providers and supporters is very tight.  We support one another.  We give back in appreciation for the love and support we have received. To get connected, know that Myeloma Crowd, HealthTree and the Myeloma Coach program are here for you.

Myeloma is challenging, but there are abundant reasons for hope! Wishing you silver linings, wonderful blessings, excellent health, deep love and great joy along your journey!

The author Todd Kennedy

about the author
Todd Kennedy

Todd Kennedy was diagnosed with multiple myeloma in December 2017 and is grateful to be celebrating his deep remission and 5-year survivor milestone. His background includes over 30 years working in the pharmaceutical industry until he decided to refocus and serve as a patient advocate, research advisor, HealthTree Myeloma Coach and support group co-leader.

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